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Welcome to today’s panel!
I/DD and Mental Health: What We Are Learning About Challenges and Needs
• Jessica Kramer, [email protected]
• Ariel Schwartz, [email protected]
• Micah Peace, [email protected]
• Katy Schmid, [email protected]
• Jennifer Sladen Alexander, [email protected]
Why is it important to learn more about mental health challenges and needs of people
with I/DD?
What have we learned about some of the concerns people with I/DD and mental health
challenges and their families face?
What steps can we as a disability community take to help people with I/DD and mental
health challenges?
Today’s Big Questions
Good mental health and wellness is important for everyone
Problem-solving
Dealing with stress or trauma
Building self-confidence
Feeling happier
Mental Health and I/DD
People with I/DD may struggle to build good mental health or wellness
May have experience significant past trauma
May not have experience problem-solving issues
May not be able to control schedule or activities
Up to 40% of people with I/DD also experience co-occurring mental illness
Mental Health and I/DD
Little is known about the best approaches for support people with I/DD and mental
health challenges
Dependence on outdated approaches (e.g., seclusion, restraint, psychotropics)
Combined with a lack of family support resources and services, this puts a burden on
people and their families
Mental Health and I/DD
Both Boston University and The Arc set out to learn more about this issue in 2018
We wanted to learn more about:
the mental health needs of and experiences of people with I/DD and co-occurring mental health challenges
the family support needs and challenges of families that include a person with I/DD and co-occurring mental health needs
From this, we wanted to develop recommendations on practices, policies, or assistance would best help people and their families
We did this through two different but related efforts
Our Projects
Worked with chapters of The Arc in Wisconsin, Colorado, and Oregon to host 5 half-day focus group meetings
Engaged 80+ people, including people with dual diagnosis, parents, siblings, and professionals.
We asked people to share the challenges and successes they have had and to identify resources or steps that people could take to help their family
Family Support Research and
Training Center Focus Groups
Intellectual and Developmental Disability Mental Health (IDD-MH)
Research Partnership:
Goal: learn about the experiences and needs of young adults with
IDD-MH while accessing and using mental health services.
IDD-MH Research Partnership
6 young adults 5 professionals/
researchers
Youth and Young
Adults
Empowerment,
Leadership, and
Learning (YELL)
Lab
Easy read web survey
76 young adults with IDD-MH who were:Ages 18-30
Living in the United States
Story Telling Sessions
On the phone and at the 2018 SABE Conference
10 young adults with IDD-MH
6 parents of young adults with IDD-MH
Based on the survey and story telling sessions, we identified 8 priority topic
areas for service providers, service delivery systems, and researchers
What We Did
Through both the FSRTC and IDD-MH Partnership, we have identified 9 areas
where participants indicated challenges:
1. Transition to adulthood
2. Insurance and financial resources
3. Professionals’ competence
4. Communication
5. Hospitalization
6. Medication and alternatives
7. Social supports
8. Lack of resources
9. Undue burden on family
What We Have Learned
Transition to adulthood can be hard for everyone.
Lack of supports and services in areas like employment, independent living, and
adult health care can contribute to a decline in mental health for young adults
with IDD as they transition out of school and into adulthood.
Transition to Adulthood
“It's difficult to find independent living that knowledgeably supports me with an
IDD and mental illness. I'm living with my parents and would like to move out,
but we can't risk a relapse.” (National Web Survey)
“Seeing all of their peers and siblings going off to college and having all of these
major life changes and they are not, contributes to a lot of their anxiety and
feeling different.”
(Virtual Storytelling Session)
Transition to Adulthood
Insurance can limit young adults’ choices for mental health treatment.
Accessibility to appropriate mental health treatment can be cost prohibitive,
even with insurance.
Insurance and Financial Resources
“I could not afford to get mental health treatment until I moved to a state
where I could get Medicaid” (National Web Survey)
“I would have loved to have my son at home but there was no way to have him
cared for at home. So, my only choice was for him to live in residential care. No
family could pay over six figures a year for care…It takes money to take care of
people with mental health and special needs, but their life matters, too”
(Virtual Storytelling Session)
Insurance and Financial Resources
Not enough professionals have the appropriate skills
and knowledge to work with young adults with IDD-
MH.
This reduces the quality and appropriateness of the
mental health treatment young adults receive.
Professionals’ Competence
“Doctors don't understand how autism, anxiety and depression can coincide.”
(National Web Survey)
“I went to one therapist and I talked to them about all of the anger that I
had…Instead of supporting me …he attacked me.”
(Virtual Storytelling Session)
“It's hard to find doctors because they go too fast (stressful and I don't
understand) or speak like I'm a baby because they see I'm cognitively disabled.”
(National Web Survey)
Professionals’ Competence
In the FSRTC focus groups, families indicated that that competence is not just an issue with health care.
Education professionals, disability professionals, and mental health professionals all often do not have the training that they need to support people who have I/DD and MH challenges.
This results in difficult effectively supporting people and families in these competency areas as well as the setting of treatment plans or goals that are unrealistic for the family.
Families also reported that professionals may not provide services and supports in a way that reflected a family’s religious or cultural beliefs around disability.
Professionals’ Competence
It can be hard to figure out if mental health
treatment is effective when people with IDD have
communication differences.
Understanding the experiences of
people who communicate differently
“Having a hard time explaining symptoms.”
(National Web Survey)
“We have to judge how medication is affecting our son based on his behavior,
his facial expression, his body language. It's been a long and hard process.”
(Virtual Storytelling Session)
Understanding the experiences of
people who communicate differently
During the FSRTC focus groups, we learned that communications challenges not only exist between doctors and patients but occurs throughout the family itself and between the family and supporters.
People, families, and professionals struggle to communicate effectively with one another, which leads to a lack of effective coordination of supports and services. It can also sometimes lead to breakdown in family relationships when family members do not feel heard.
Communication Challenges
Lack of appropriately trained staff can make
inpatient hospitalizations a traumatic experience
for young adults with IDD.
Young adults want community-based options when
their mental health is bad.
Hospitalization
Hospital
“[I] was in the hospital for over one month, because doctors did not know what
medicine would work best.” (SABE Storytelling Session)
“I would constantly discuss how I wanted to die without being direct about it,
out of a fear I would be hospitalized.” (Virtual Storytelling Session)
“I lived in an institutional orphanage for the first few years of my life, and so
there's trauma around that. So, I do not like any type of institutional setting.”
(Virtual Storytelling Session)
Hospitalization
During the FSRTC focus groups, we learned that people with I/DD and co-
occurring mental health often end up in a cycle of hospitalization, return to
home, and re-hospitalization.
This often occurs because there may be no step-down supports that are
available to people who have multiple diagnoses or challenges or may occur as a
result of trauma experienced and compounded in the hospitals.
Many families reported that they often feel that they are in crisis and are
continual cycling through crises – that they have no way to get out of the crisis
situation after hospitalization.
Hospitalization
Young adults want choice and control over the
use of medication.
They want their choice to be respected and
supported.
Medication
“Medication, at first, was a disaster, but once my dosage was adjusted and I
grew to tolerate it, it worked wonders for me.”
(Virtual Storytelling Session)
“I need better medicine with fewer side effects.”
(National Web Survey)
“We did try medication ... It actually had an adverse effect because of how he
was not able to metabolize the medication.”
(Virtual Storytelling Session)
Medication
Young adults with IDD-MH use strategies, supports, and options other than
medicine to help their mental health.
Many young adults reported that therapy and involvement in community
activities helped their mental health.
Young adults especially need access to community activities and to high-quality
counseling/therapy when their mental health is bad.
Alternatives to Medication
Relaxation strategies, such as deep breathing and meditation
Therapy (therapists or counselors).
Doing activities they enjoy and make them feel good
Exercise
Doing art and other creative activities
Spending time with pets
Spending time alone
Cognitive behavioral therapy
Listening to music or watching TV/movies
Medical marijuana
Involvement in self-advocacy to learn to stand up for
themselves
Reported Non-Pharmacological
Strategies
“I try to do something creative like writing or doodling to get my mind off
things.” (National Web Survey)
I got started in the self-advocacy movement, and I stand up for myself and what
I want for my treatment. (SABE Storytelling Session)
“She needs less medication and more hands-on kind of therapy other than taking
more pills.” (Virtual Storytelling Session)
“My son… has the right to go to church but couldn’t go. Pretty sure no one’s
mental health is better when you lock them up, take away everything that gives
them life.” (Virtual Storytelling Session)
Alternatives to Medication
Young adults with IDD-MH need support from people
they can trust and who understand their experiences.
Family and friends can provide strong supports for
young adults' mental health.
But young adults often don’t get the social support
they want and need for their mental health.
Social Supports
“I like talking with and spending time with my family and my friends, a lot.
‘Cause it helps me a lot…friends are always the best medicine”
(SABE Storytelling Session)
“[I am] always depressed and people are tired of hearing about it.”
(National Web Survey)
“It's been so helpful for us to have these other families that understand our
daily frustration and can share information and also be part of our mental
health team.” (Virtual Storytelling Session)
Social Supports
People with dual diagnosis, parents, and siblings may often feel lonely or
isolated as a result of lack of understanding, difficulty communicating,
discrimination, or stigma.
People with I/DD and mental health challenges need more opportunities for
emotional support, inclusion, and building relationships.
Parents and siblings also need more opportunities for emotional support and
peer mentoring.
Families need more training to help build social and independent living skills,
deal with stress, and create plans to more effectively transition throughout
their lives together.
Social Supports and
Training for Families
Throughout focus groups, we heard repeatedly that there is often a lack of appropriate resources and services for families.
The disability and mental health systems are extremely complex and inflexible. Families struggle to navigate between the two, and care is often delayed or rejected because families are caught between the two systems on who would pay.
Lack of Resources
and a Complicated System
Families are also often responsible for coordinating care between the two system but do not receive support to learn how to navigate the system nor on what resources are available. Families have to be coordinator, communicator, financier, and support provider.
But, the system treats everyone as if they are an island unto themselves, which may result in care not being appropriate for the family or causing additional burden on the family.
Especially in cases where people have multiple children receiving support, some families reported a need to becomes an “un-family” in order to get the care for each member.
Undue Burden and Stress
Creating an “Un-Family”
Steps and Actions
the Disability Community Can Take
Create and Develop Training:
Develop a nationwide, replicable training around I/DD and mental health for
mental health, disability, and education professionals
Support trainings aimed at enhancing the cultural competence of disability,
mental health, and education professionals
Expand future planning training and resources to target and support families of
people with dual diagnosis to create transition plans for each part of the
families’ lifespans
Expand trainings for caregivers that are intended to reduce caregiver burden
Steps and Actions the Disability
Community Can Take
Advocate for or Support Systems Change:
Support the development of and improve policies and procedures that provide
for easier access, communication, and navigation between the I/DD and mental
health service systems
Support research activities that further develop evidence-based mental health
treatments that are alternatives to medication and that are adapted to the dual
diagnosis population
Steps and Actions the Disability
Community Can Take
Support the Development of New Resources, Including:
Policies and programs that will allow all people with dual diagnosis and family
members the ability to access quality mental health care, regardless of whether
they have private or public insurance
Support groups for people with dual diagnosis, siblings, and parents so that
people can build more relationships and avoid feelings of isolation or loneliness
Steps and Actions the Disability
Community Can Take
Enhance Community Awareness:
Create public awareness campaigns to
counteract stigma and misperceptions
around dual diagnosis
Steps and Actions the Disability
Community Can Take
Steps and Actions
States and Policymakers Can Take
Provide more comprehensive, wrap-around and integrated supports for young adults with
I/DD transitioning to adulthood.
This includes:
Medicaid waiver programs that include MH services & supports
Improving access to and programming for post-secondary education
Improving access to affordable housing in the community
Include planning for MH needs in IDEA transition plans.
Steps and Actions States and
Policymakers Can Take
Provide more community based treatment options for young adults with IDD-MH.
Some examples are:
Crisis prevention and planning for young adults with IDD-MH, their families, and
direct care providers.
Adaptation of day treatment or partial hospitalization programs currently available
to people with mental health conditions, so they are appropriate for young adults
with IDD-MH.
Steps and Actions States and
Policymakers Can Take
Include young adults with IDD in current peer-led or peer mediated mental health
recovery services, and/or develop “peer-to-peer” networks for young adults with IDD-
MH.
Harness knowledge and experience of IDD-MH advocates and advocacy organizations.
Best practices in family support and training such as “Parent-To-Parent” should address
mental health and provide mental health resources to families.
Steps and Actions States and
Policymakers Can Take
Steps and Actions
Health Systems Can Take
Reimbursement
Identify innovative ways to deliver mental health counseling and supports at lower costs,
such as mHealth or tele-health, to young adults with IDD-MH.
Insurance companies should provide reimbursement for non-pharmaceutical
services/supports at a rate equal to reimbursement for pharmaceutical and inpatient
services.
For example: counseling, health and wellness services, community-based treatment,
and transportation
Steps and Actions Health Systems
Can Take
Delivery of Care
Hospitals should adopt a trauma-informed approach to care for all individuals, including
young adults with IDD-MH.
Service systems, hospitals, and independent providers should have high and low tech
communication devices available for use by young adults with IDD-MH.
All materials about mental health conditions and treatments should be published in plain
language/easy read so young adults with IDD-MH can understand.
Steps and Actions Health Systems
Can Take
Steps and Actions
Mental Health Professionals Can Take
Improve communication by…
Asking young adults with IDD-MH how they best understand information (for
example, written, oral, pictures) and follow their request during appointments.
Checking for understanding and consent.
Communicating directly with young adults with IDD-MH, rather than their
parents/staff.
Allowing more time for appointments when working with young adults with IDD.
Learning how behavior is a form of communication.
Listening carefully to family members and support personnel who know young adults
best.
Steps and Actions Mental Health
Professionals Can Take
Improve medication management by…
Not assuming medication is the first or best option for treatment.
Respecting young adults who choose to not take medication or use
natural/homeopathic remedies.
Collaborating with young adults and families to identify the medication(s) that
produce the greatest benefit and have the fewest side effects.
Explaining the risks and benefits of medications, including side effects, in a way
young adults can understand.
Steps and Actions Mental Health
Professionals Can Take
1. Mental health and mental wellness are really important for people with disabilities.
This is an often overlooked part of a person’s life.
2. We have learned a lot about the challenges that people and their families are facing
in accessing mental health services that appropriate, holistic, respectful, and
community-based and that support both the person with disabilities and their
families.
3. There are several things that the disability community, health systems, and mental
health professionals can do to make things better for people with disabilities and
their families. More can and should be done to support people’s mental health.
Answering Today’s Big Questions
How to Support People During Psychiatric Emergencies: https://aadmd.org/page/emergency-care-webinar-series
Mental Health Wellness for Individuals with I/DD: http://training.mhw-idd.uthscsa.edu/
Trauma Informed Care: Perspectives and Resources: https://gucchdtacenter.georgetown.edu/TraumaInformedCare/
Center for START Services: https://www.centerforstartservices.org/community-resources
Accessing Home and Community Based Services: A Guide for Self-Advocates: https://autisticadvocacy.org/resources/books/accessing-hcbs/
Resources
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